Hi everyone. I began Taxol Friday. I was not at all apprehensive since I had taken the drug 11 years ago. I thought I knew what to expect.
I left the clinic on a steroid high. No pain. Very little fatigue. I even had dinner guests. But the clock struck 10 p.m. and pain began building. By 3 a.m. it was excruciating, and I had to wake Scott who had been up since 3 the previous morning in order to get me to surgery for the port.
I was writhing in pain. Nothing I could do helped. It was up in the day Saturday when I finally got some Gabapentin and dexamethasone. I am now pain free just week as a kitten.
Scott did the research and found out about the pain syndrome. It is apparently not terribly uncommon. Be on the lookout. If you have a lot of nerve damage from breast surgery (I think that was part of my problem, but that's just me), maybe just ask for some Gabapentin and oral steroids.
I'm going to try one more round. If this happens again, I'm stopping treatment all together.
Much love, Andi
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Arisgram
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Hello Andi, so very sorry to hear of your pain. I too take Gabapentin to ward off sudden nerve spasms in my right breast area as I currently have a wound vac on due to a botched Mastectomy we're repairing. My onc finally prescribed Gabapentin to me to take 3 times daily just to stay ahead of the curve so to speak. Praying you'll find a solution to the pain. You're in my thoughts and prayers ! xoxo Julia
And I'm sorry to hear of your healing woes too! I've heard some stories in the past from others who have had a bad experience from their mastectomy surgeries. It makes me feel very lucky I never had those particular issues. I hope everything heals quickly from this point
Gee that sounds like a terrible experience. I do hope it is a one off type of thing. I have never heard of this type pf reaction to chemo before! Thank goodness the meds you got worked! Wishing you the best for the next round xo
Sorry you are having trouble. We never got in with Taxol, back in 2018 it didn't do anything, combined with Atezumibab in 21 it made Susie feel really ill, bed ridden, breathless. We won't do it again, our ONC doesn't bother to prescribe it. Maybe you are the same? I'm sure there are other lines for you? Sending best wishes. XXX ❤️
Hi AndiAll that pain on top of the worry, I feel for you.
Hopefully your body won’t be as shocked on the next round. The Gabapentin should be in your system as well by then which should help.
Hope you can rest and recover quickly.
Sending hugs
Clare x
Hi Hope you find relief ..Pain we do not need with this journey
Hello Andi, sorry to hear about your experience. That happened to me 19 years ago when I had taxol. That first treatment pain was terrible. I had treatment on Friday and Sunday evening I felt like someone was hitting my bones with a sledge hammer. My oncologist prescribed percocet, but because I had already been in so much pain it took longer than usual to calm me down I had to go in for an injection of the same. Thereafter I took the pain meds when I first felt a tinge of pain on those Sunday evenings and it did the trick. Good luck my warrior friend.
I am so sorry to hear about your reaction Andi , I have never heard of the pain syndrome before. I hope your next treatments is much more gentle for you . When is your next treatment and was this one considered a loading dose ? Have they given you any options for other treatment ?Luann
Sorry to hear about your suffering. I had a lumpectomy and did not suffer pain after the surgery. But I know a full mastectomy must be a very serious operation and must certainly come with pain. I wish you the best for your future recovery.
Hi Andi, That pain is so scary. I’m sorry you had to go through that awful event. Thank goodness the gabapentin helps settle things down. Sending best wishes to you and everyone. Take care.
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